Support Families Who Have a Terminally Ill Child

Karen: “Without Rainbow Trust this family would have fallen apart.”

Jonathan Allen, 16, Karen, Pippa, 18, Holly, 14, Marcus, 11

When 16 year old Jonathan noticed pains down his left side, he thought they were muscular but when they got worse, his mum took him to the doctor. Sadly, keen karate fan Jonathan, was diagnosed with bone cancer.

He started chemotherapy on 10 March 2013.

Jonathan

“It was only a week before I was diagnosed but every time I stretched I was in pain. I mentioned it to my mum and took some painkillers but when it didn’t improve we went to the doctors and I was referred for an emergency MRI. I had to have an operation to remove the tumour, which was tricky as it was behind my ribs, but they managed to remove the tumour and I started chemo straight away.”

Jonathan, who is studying xxx at college, managed to keep up with his studies throughout his treatment aside from a couple of days off when he was at his worst. He’s continuing his course and hopes to be a veterinary nurse or lead talks about the animals that he deals with.

“The doctors told me to take it easy after my treatment and I have been, to an extent, but I don’t want to miss out on what my friends are doing. I’m hoping to get back to some karate training soon too.”

Karen, Mum

“Initially I just gave Jonathan some painkillers and thought nothing of it but it became clear there was something else going on so we took him to the doctors and were referred for an MRI scan. It was a bolt out of the blue when he found out he had cancer and I wasn’t sure how I would cope as a single mum. I’ve got Jonathan’s older sister, Pippa, 18, who is a massive help but has her own life as well as the two younger ones, Holly, 14 and Marcus, 11. Initially when I said I would struggle I was told that Pippa would have to leave college and become a ‘second mum’ to the kids, which I was not happy about. I was also told that another option was to put the younger kids into foster care, which I was determined would not happen.”

“Rainbow Trust and our Family Support Workers Pete and Jade, saved us when we heard about them in September 2013. Without them, Jonathan would have lost his college place, Pippa might have had to leave college and we would have been struggling with the three hour round trip to Addenbrookes while looking after the younger kids. I can’t explain the difference that Rainbow Trust has made to us.”

“It’s little things. Like last week Jade took Pippa and Holly to Lakeside and they all went shopping. It meant that they had a day which was just about them, which is so important when we have all had to focus on Jonathan. Jade also has an amazing relationship with Jonathan and we all trust her. He’s happy in her company, as am I and the other kids, and her support has allowed us to get on with our lives throughout Jonathan’s diagnosis and treatment. I’ve told lots of people about the amazing work Rainbow Trust does. Without them this family would have fallen apart.”

Pippa, Sister

“Having Jade has really helped eased the tension between me and mum, she’s been a lifesaver. We’re both very strong willed and it’s been a hard time but Jade makes sure that we both have someone to talk to. Going to Lakeside was brilliant and something we wouldn’t have had time to do without Jade. Without Rainbow Trust, mum and I would have been at each other’s throats but Jade has helped us work through difficulties and have time to ourselves.”

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When Charlotte, a single mum of one, discovered she was pregnant, she was so excited and happy but a pre natal scan showed that, tragically, her baby had a heart defect and was not expected to survive birth.

The hospital contacted Rainbow Trust and asked us to support Charlotte at her baby’s birth, to take care of them both and her baby’s end-of-life care. They also asked us to help Charlotte to look after Alfie, her two-year-old son.

When Bryan, our Family Support Worker in Swindon, called Charlotte he discovered she was already in labour. She asked for his support and he went straight to the hospital. She asked him loads of questions and talked about death, dying and funerals – she was very open about it all. Bryan stayed with her and supported her throughout her labour and her baby boy, Charlie, was born without any intervention.

For a 21 year old, the birth of her baby and his imminent death left her reeling between feelings of excitement, relief, fear and grief. Charlotte hoped that he was all right - he looked ‘perfect’, with no signs of being ill. Bryan stayed with her until she settled and agreed to return in the morning.

Sadly, a scan confirmed baby Charlie’s condition and prognosis. Charlotte was very upset and wanted to be with Charlie at the hospice. While she was there, Bryan spent time with Alfie and took him to visit her. He listened to Charlotte as she talked about baby Charlie’s impending death, and together they made funeral plans.

While at the hospice, Charlotte wanted to take Charlie home to “see his home”, the bedroom she had prepared and for them to have some time like a ‘normal family’. Bryan and a hospice nurse accompanied Charlotte and her boys home. This time was very precious to Charlotte. She felt she could pretend that everything was normal.

Charlie lived for 19 days. After he died, Charlotte struggled to come to terms with his death and relied on Bryan greatly for emotional support during the week leading up to Charlie’s funeral.

Bryan continues to support Charlotte and Alfie. He takes them to the cemetery and also encourages Charlotte to visit Rainbow Trust’s local drop-in group for additional support.

Bryan supported Charlotte through the most difficult time of her life. He will be there for her as long as she needs him.